Duh, I see the error of my ways now. I'll try to read more carefully but will also give myself a little break since in my case this is like asking the same question two ways.
First symptoms in February 1990. Radiologist describes abnormality on medulla in the area of the corticospinal tract and expresses concern but makes no mention of lesions elsewhere. Recommends clinical corrolation and f/u in 6 months. Local neuro dismisses possibility I could survive damage 'in that area' and never mentions f/u MRI study
May 1990. Second opinion at major center for MS diagnosis and treatment. Symptoms are minor by this time. Exam and MRI are stated to be normal by this expert. He suggests stress may be the cause of my former symptoms and adds I was quick to dismiss that idea as unlikely. He "sees no reason to suspect MS as a cause and hopes the patient and her family finds this reassuring."
Actually, none of this was very reassuring to the patient and it didn't do much to help her feel confident about her medical providers either. With no desire to persue further medical opinion 'the patient' went home and self-treated or lived as best she could in spite of the come and go symtoms until.......
Auguat 2009 - a full episode of urinary incontinence and a fresh out of residency PCP introduce the possibility of MS again. The 1990 MRI is dug out of the archives and found to show clear evidence of the lesion on the medulla as well as several others in periventricular and occipital regions of the brain. A full work up of new labs, MRI and VER are done.
October 2009 - tentitive diagnosis of MS given by general neuro but recinded two weeks later
February 2010 - diagnosised with MS by internal medicine MS specialist and treatment with Copaxone ordered
I was dxed within a month after an initial flareup, after learning more about it I realized that I had actually had it with what seems like forever. I had little things go on about every 10 years that could have been something else, but now I know it was MS. Which actually makes me feel better finally knowing. No I find out I have RA
It took ten years from my first visit to my family doctor until I was dxed. Of course looking back knowing what MS is and how she acts it would have started a good ten or more years before I began to search. It was not until those last ten years before I was having a hard time keeping up with my life.
I think I am like many strong women that pushed it aside because we were too busy raising our families and /or pursuing our careers.
I think it was about 15 years when I started to feel bad, but went with the rheumatological route because of low titer ANA tests. Other health issues complicated the picture (hypothyroidism, migraines, mild arthritis, Raynaud's, high blood pressure). People with MS can have other health problems just like anyone else!
I have nothing against realistic assessment of neurologists' diagnostic inadequacies. However I don't want people to think that diagnosis prior to the late 1990's would have made much difference in their current medical situations.
My diagnosis was greatly delayed—I saw doctors for optic neuritis in 1982 and 1983 and was not diagnosed until 2002 (when I finally left the "care" of my general practitioner and found a neurologist. At diagnosis I had lots of brain lesions and a couple of spinal lesions).
During the majority of the delay in my diagnosis, no disease modifying therapies even existed for the treatment of MS. Unless a person participated in the clinical trials of the current disease modifying therapies, no diagnostic delay before 1993 caused any then preventable damage.
In 1983, the neurologist I saw once correctly (and rather rudely) told me that MS was hard to diagnose and that no treatments existed (other than steroids for acute problems). He didn't pursue a diagnosis because at that time there really was no point unless I had developed other problems.
Not until July 1993, did the FDA approve Betaseron, the first disease modifying therapy for MS. After its approval, demand was so great in the US that a lottery was established for the distribution of Betaseron. FDA approval of Avonex and Copaxone followed in 1996.
When the first DMD became available, the neurology community tried it on the more severely impacted. The message to the neurology community stressing early diagnosis and early treatment came several years after the introduction of these three DMDs.
Not until 1999, did research indicate that axon transaction started very early in the MS disease process. At that time, researchers began to urge neurologists to get patients on treatment as early as possible. It took some time to get that message into mainstream neurology and even more time to reach general practitioners (at least those whose minds were open to new ideas).
Despite having optic neuritis in 1982 and 1983, I had no overwhelmingly obvious other problems until 2002. I believe that even with a timely diagnosis, I probably wouldn't have been offered treatment until 1999 or later.
So a twenty-year delay in my diagnosis really only delayed initiation of my treatment by three years.
In summary, for most of us, diagnostic delays before 1993 made no difference in our present circumstances. And diagnostic delays between 1993 and 1999 for patients with low EDSS scores probably made no difference to a patient's current medical status—because of the neurological knowledge and practices of the time.
Just reiterating from the last poll - yeah, I had symptoms for 20+ years before being diagnosed. But once I saw a neurologist for symptoms I could no longer ignore, the whole diagnostic process took 6 months.
Hi, and welcome if we haven't talked. Your point is well taken, but a lag of even the very legitimate 6 to 7 years is pretty discouraging. It's a lot of suffering and damage when the studies were beginning to show the benefit of early treatment and thus, the need for a vigorous work for diagnosis.
The McDonald Criteria (revised, 2005) were complicated, but easily understandable by me and sooo misunderstood by such a large number of neurologists. If a doctor is going to state that (s)he specializes in MS understanding those Criteria and the intent behind them would have taken just a little time and concentration. Afterall these guys had the grades and brain power to get into and graduate from medical school and residency .
What I am thrilled by is that very close to 3/4 of the polled had short disgnostic periods.
I would say you were damn lucky to have a slow progression of MS. Don't even think for a moment everyone carries your lucky karma. While happy for you, I wouldn't want anyone on this board that is searching to stop because they think it won't make much difference. MS can be ugly to some of us.
I never suggested that anyone stop pursuing a diagnosis or that I consider MS to be mild. I'm on disability because mentally I couldn't do the job that I had held for over 30 years.
For several years at the end of my career, I couldn't keep up with changing requirements and work load—I couldn't remember or correctly interpret technical documents that I had previously written. (Usually the drafter of a document can answer other people's questions about the document—but not "lucky" me with the slow progression!!)
For years after my diagnosis, I blamed myself for the delay in diagnosis even more than the doctor who blew me off—ignoring my concerns about MS (instead applying his stress-depression-somatization wheel of diagnosis for his female patients).
A nurse on another board suggested that I should have known to insist on an MRI and a referral to a neurologist, only adding to my self-blame.
My post was written to people like me who experienced serious symptoms before 1999 but did not doggedly pursue a diagnosis. My post was intended to assure those people that any failures to be proactive before 1999 probably did not worsen their current medical state.
I don't look for support on this forum, because despite my large spinal lesion, my numerous black holes and my dozens and dozens of brain lesions, people find out that I can walk and consider my disease course mild. (After all I only went completely blind in one eye once!)
I'm sorry if anything said here challenged you, your suffering or what you said. Your post was entirely true. Those that languished without a diagnosis in the years before about 2000 would likely not have received a DMD unless their disease was severe - as you said.
I, like you, lost my career when I could no longer instantly know what to do as a baby's vital signs began to deteriorate. I still mourn the loss of my profession and break out in sweats thinking what might have been had there not been an alert RN nearby.
Your reassurance was kind to anyone who might have felt guilty about not being proactive. Thank you.
I offer an apology here. I am still new enough to the dx of MS that I had no idea that DMD's were not available until the 1990's. So I sure did misunderstand your post. I hope this apology will be accepted.
In fact, I guess it was ten years before my own search where I always wished I had looked for help. I didn't know until today none would have been available anyway. My real search began in 2000. Although it took ten years, I was the one blessed with good karma then.
I am sorry I took off on you. My worry is the damage done to me is so severe, I never want to quiet for fear it may happen to someone else. I truly did not know there would have been no help anyway.
I almost responded to your orginal post in a way that I think would have added negatively to your most recent response. My approach to a lot of posts on this forum isn't technical (I am a dummy when it comes to the medical knowlege and jargon used to describe MS, the tests involved in the dx of it and the drugs used to treat it).
Usually my approach is more personal, more of a gut response to people's posts rather than what they might actually be writing down. Ok, accuse me of of psychoanalyzing sometimes but your orginal post hit me hard.
Your information would apply directly to me since I experienced my first sx back in 1992? I didn't get a dx until August 2010. Everything you said in your post I shook head in an affirmative way...all true... but there was something about it that told me that you were having a hard time with your time line and getting your dx. To me it was obvious that you were still... (? yes, I realize I don't know you) having a hard time with it all.
Your most current post tells me the why I got that feeling. I am so sorry you went through that and were made to feel that way. I am also sorry that you don't feel like you fit in here. We all come here and expose ourselves to each other. We share our ups and our downs. We care and love one another.
Some of us are really bad off b/c of our disease and some of us have no sx at all. Some recently dx, a lot in limbo land and some have known they have had MS for decades. And while we do misunderstand one another (it's hard to get the intended meaning of something when it's in back and white on a screen rather than seeing/hearing someone say it), we are quirky family that works through those misunderstandings.
You are welcome here! Please stay. I love the way you write and you have wisdom that can help people. You also represent a group of people that needs representing and understanding.
As a limbolander, this post is a bit disconcerting. I haven't had a spinal MRI yet (it's coming in a couple months when my other MRI's can be logically redone.)
I *think* I presented with symptoms a year and half ago but have had strange symptoms off/on for many years. After my 1st husband died 6 years ago, I had the debilatating fatigue, muscle weakness and extreme fatigue along with cognitive deficits... I can remember struggling with other symptoms but I can remember what they were in detail. I just remember asking other widows if they were normal?
Those all seem pretty normal right?....Except at the young age of 35 I also had an extremely rare (for my age) issue with ischemic colitis. The blood to my lower intestine stopped flowing (no clot) and if had remained another 20 seconds longer I would have died. They did not find a cause after running several blood tests. I attributed them all to grieving/stress.
Now 6 years later, I have one non-specific perventricular lesion that was missed in my MRI report and abnormal clinicals off/on for a year. First Neuro documented positive rhombergs, ON symptoms, INO... Now, MSologist documented mild right foot drop and decreased sensation in my left leg and toes as well as abnormal left side leg reflexes. My symptoms seem to be multi-focal which seems atypical for early MS.
Of course my concerns are vast... 5.10.20 years or more longer before diagnosis OR what could this be if it's not??? Sigh. I am not sure if they are all connected or separate but I've been reassured that if I have MS it's a mild or more benign process. The truth? It doesn't really feel that way. I know there are many others that have more severe issues but I felt like my body was attacked as a whole, not just one part. Anyway - this is just concerning. I don't want to wait that long.
I did not vote in the survey because I don't have a dx. I've had symptoms for 20+ years, but none that couldn't be blamed on something else until last year. So far, after 3 neuros and one MS specialist, all conclude it is nothing because my MRIs show nothing. I was told to wait until something major happens. My point in pursuing all of this was to find out what was wrong before something major happens.
I don't think I can afford to see too many more neuros for consults to get the same answers. Unless someone can point me to a neuro that can see beyond the holy grail of MRIs, I'm pretty well done wasting my time, money, patience, and emotional energy on this process. You can only hear, "It's all in your head," so many times over the course of 20 years with increasingly disturbing and progressive symptoms before you realize the field of neurology is full of quacks that don't know a snake until it bites them on the nose.
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